- PDtrials
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PDtrials is an initiative to increase education and awareness about Parkinson's disease clinical research. The initiative is led by the Parkinson's Disease Foundation, and involves a collaboration between a number of Parkinson's organizations in the U.S. The main objective of PDtrials is to provide information to help people with Parkinson's disease learn more and make informed decisions about participating in clinical studies. PDtrials works to accomplish this goal through the www.pdtrials.org website and other educational materials.
PDtrials aims to address the lack of awareness about clinical research in the Parkinson’s community, and increase participation. Currently, less than 10 percent of doctors discuss trials with their patients, and less than one percent of people with Parkinson's disease actually participate in clinical research studies.[1] To increase awareness and participation, the PDtrials website lists Parkinson’s clinical trials currently seeking participants throughout the US and Canada and posts news articles on current Parkinson’s clinical research findings.
Contents
Clinical Trials Search
The central component of the PDtrials initiative is its clinical trials search engine. Through the service, people can search for specific Parkinson’s clinical trials using criteria such as location, trial type, symptom, and keyword. The site also allows people with Parkinson's disease to browse all posted clinical trials.[2]
Two types of trials featured prominently on the PDtrials site are those for people who have been newly diagnosed with Parkinson's and have not yet started taking medications, and for people who are family members of someone living with Parkinson's. Many of the newly diagnosed trials focus on neuroprotection and involve testing whether a certain compound offers protection to dopamine-producing cells in order to slow or stop the development of Parkinson's.[3] Many of the trials for family members are studies that enroll both people with Parkinson's and their immediate family members in order to learn more about the genetic factors which influence the disease.[4]
Clinical Research Information and News
To increase education about participating in Parkinson’s research, PDtrials offers basic information about clinical trials through a section of its website called Clinical Research 101. This resource for people with Parkinson's addresses such questions as what a clinical trial is, why people with Parkinson's should participate in clinical research, how they can participate, and what the rights and responsibilities are for clinical trial participants.[5]
The PDtrials site also contains a section featuring the latest Parkinson's disease clinical research news, which is updated several times a month.
Educational Resources
PDtrials offers print educational materials to help people with Parkinson’s and others who wish to learn more about clinical research or consider participating in a trial. These materials may be requested through the PDtrials website, and include a bi-annual bulletin of trials actively seeking participants, brochures explaining the clinical research process, and guides that discuss what questions to consider when deciding to participate in a study and to stay informed throughout the clinical research process. PDtrials also maintains a Partners in Progress Honor Roll for people who have participated in a Parkinson's disease clinical study.
Listing a Clinical Trial
Researchers or coordinators representing Parkinson’s clinical studies currently seeking participants can have their studies posted on the PDtrials website. The first step is to fill out a trial information form. PDtrials obtains the approval of the study's sponsor for all content related to that trial, and there is no charge for trial listings.[6]
Collaborators and Advisors
The PDtrials coalition is led by the Parkinson's Disease Foundation (PDF) in collaboration with other leading Parkinson's advocacy and research organizations. Other organizations that make up the PDtrials coalition include the American Parkinson Disease Association, the Michael J. Fox Foundation, the National Parkinson Foundation, Parkinson’s Action Network, Parkinson Alliance, and Worldwide Education and Awareness for Movement Disorders. Advisors to the PDtrials initiative include the National Institute of Neurological Disorders and Stroke (NINDS), Parkinson Study Group, the Parkinson’s Institute, and the Parkinson Pipeline Project.[7]
References
- ^ http://www.parkinsonsaction.org/Survey-Says-Patients-not-Referred-to-Clinical-Trials.html
- ^ http://www.pdtrials.org/en/about_PDtrials_what
- ^ . PMID 19117366.
- ^ http://www.bu.edu/genepd/
- ^ http://www.pdtrials.org/en/clinical_research101
- ^ http://www.pdtrials.org/en/about_PDtrials_listing
- ^ http://www.pdtrials.org/en/about_PDtrials_committee
External links
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